Health Data

Making Sense of Blue Button, Meaningful Use, and What’s Going on in Washington …

At the recent Health 2.0 Conference in Santa Clara, co-chair Matt Holt expressed frustration about the difficulty of getting copies of his young daughter’s medical records. His experience catalyzed a heated discussion about individuals’ electronic access to their own health information. Many people are confused about or unaware of their legal rights, the policies that support those rights, and the potential implications of digital access to health data by individuals. The Health 2.0 conference crowd included 2000 entrepreneurs, consumer technology companies, patient advocates, and other potentially “disruptive” forces in healthcare, in addition to more traditional health system players.

Why is this topic so important? Until now, most people haven’t accessed their own health records, whether electronically or in paper, and I believe that making it easier to do so will help tip the scales toward more meaningful consumer/patient engagement in healthcare and in health. Access by individuals and their families to their own health records can empower them to coordinate care among multiple healthcare providers, find and address dangerous factual errors, and take advantage of a growing ecosystem of apps and tools for improving health-related behaviors, saving money on health services, and getting more convenient, personalized care.

A shorthand phrase for this kind of personal empowerment through access to digital health data is “Blue Button,” which is also the name of a public-private initiative in which hundreds of leading healthcare organizations across the US participate. The Blue Button Initiative is bolstered by the electronic access to health information requirements for patients in the “Meaningful Use” EHR Incentive Program, which is administered by CMS (the Centers for Medicare & Medicaid Services) with companion standards and certification requirements set by ONC (the Office of the National Coordinator for Health Information Technology). Continue reading “Getting Your Own Health Records Online: The Good and the Not So Good”

Recently the Centers for Medicare and Medicaid (CMS) made troves of data publically available. CMS released data on hospital charges, physician utilization, in addition to other data sets. Journalists and academics were excited to potentially confirm their theories on healthcare spending.

We at The Engelberg Center hosted an event, Hacking America’s Health where experts from the Brookings Institution and the government spoke to participants regarding the impacts of data transparency on the nation’s healthcare system. The purpose of the festival is to focus on “innovators from around the world and their transformative solutions to global challenges.”

Out of this discussion emerged a consensus that data transparency could spur disruptive innovation in the health sector but overcoming several key barriers was essential to maximizing the benefits to the public.

Benefits of Data Transparency

1. Help Consumers Make Informed Decisions

Open data offers numerous benefits to consumers. The CMS data unveils the enormous variation in the cost of different treatments. Enabling consumers to find high value care providers improves the efficiency of the market. Price transparency can also uncover providers that charge unusually high prices and puts pressure on them to lower those charges. Finally utilization can reveal if a doctor uses a rare treatment with regularity. All of these data empower health care consumers to choose wisely.

2. Identify Vulnerable Patients

CMS has used open data for numerous projects to help patients. One project involves collaboration with local and state governments. Using Medicare claims information they identified specific patients who could be in special danger in the aftermath of a natural disaster. Without electricity it’s impossible to operate a lifesaving device like a ventilator or nebulizer. The claims data allows emergency officials to notify such individuals about the locations of shelters.

3. Data Mashups

Combining together data sets could help identify bad actors in the health system. For example merging data from the Sunshine Act which describe payments and items given to physicians combined together with utilization data from CMS. This could identify doctors who were using a drug or procedure due to a financial relationship rather than best practice. Other data mashups could also uncover unexpected patterns.

Patients who search on free health-related websites for information related to a medical condition may have the health information they provide leaked to third party tracking entities through code on those websites, according to a research letter by Marco D. Huesch, M.B.B.S., Ph.D., of the University of Southern California, Los Angeles.

The research letter was recently published in JAMA Internal Medicine entitled “Privacy Threats When Seeking Online Health Information” and looked at how 20 health-related websites track visitors, ranging from the sites of the National Institutes of Health to the health news section of The New York Times online. Thirteen of the sites had at least one potentially worrisome tracker, according to the analysis performed by Dr. Huesch.

He also found evidence that health search terms he tried — herpes, cancer and depression — were shared by seven sites with outside companies. According to the paper:

“A patient who searches on a “free” health-related website for information related to “herpes” should be able to assume that the inquiry is anonymous. If not anonymous, the information knowingly or unknowingly disclosed by the patient should not be divulged to others.
Unfortunately, neither assumption may be true. Anonymity is threatened by the visible Internet address of the patient’s computer or the often unique configuration of the patient’s web browser. Confidentiality is threatened by the leakage of information to third parties through code on websites (eg, iframes, conversion pixels, social media plug-ins) or implanted on patients’ computers (eg, cookies, beacons).”

Dr. Huesch says that he was inspired to investigate this area by the archive of coverage on the topic by The Wall Street Journal on how the technology and market for your online information work. The most recent piece in this series is on Facebook privacy settings and some of the risks associated with “Graph Search.” This entire series is very good and worth the read.

The latest news story to examine the issue of patient access to implantable cardiac defibrillator data (a variation on the theme of “gimme my damn data”) is an in-depth, Page One Wall Street Journal story featuring Society for Participatory Medicine members Amanda Hubbard and Hugo Campos. They have garnered attention in the past – one example is another piece on Hugo on the NPR Shots blog about six months back. The question posed by these individuals is simple — May I have access to the data collected and/or generated by the medical device implanted in my body? — but the responses to the question have been anything but. It is important to note that not every patient in Amanda’s or Hugo’s shoes would want the data in as detailed a format as they are seeking to obtain, and we should not impose the values of a data-hungry Quantified Self devotee on every similarly-situated patient. Different strokes for different folks.

The point is that if a patient wants access to this data he or she should be able to get it. What can a patient do with this data? For one thing: correlate activities with effects (one example given by Hugo is his correlation of having a drink of scotch with the onset of an arrhythmia — correlated through manual recordkeeping — which led him to give up scotch) and thereby have the ability to manage one’s condition more proactively.

In a few days, I will be releasing the most controversial healthcare project I have ever worked on. But you do not need to take my word for it. I will be releasing a completely new healthcare data set. That data set, which will remain a “Mystery Data Set” until its release to the healthcare data scientists attending Strata RX, should completely revolutionize the way we think about healthcare delivery in the United States.

This mystery data set is the first real outcome of the Patient Skunkworks project. Patient Skunkworks is a new way for me to try and create high-impact but low-profit software projects. This is part of a new Not Only For Profit software development model that I have been working on. The new company forming to do this work will be called Not Only Development.

I will be releasing this data during the last keynote on the first morning (Oct 16) of the 2012 Strata RX conference. There is simply no way, in a single keynote, to even begin understanding all of the ways that this data set will be leveraged to improve healthcare. More importantly, there is really no way to adequately explain why I would choose to give away such a valuable and dangerous data set.

To help people digest the implications of this data set, I will be writing two articles about the data set. This one, before the release which helps to explain the underlying motivation behind the release, and another one after the release explaining what the data set is, and how I think it can be leveraged.

I am releasing this dataset because I believe that the only way to solve the problems in healthcare is to embrace a radical openness with health data. Healthcare data, with the exception of patient identity data, belongs in the open, in the sunlight. When used correctly, I believe that healthcare data should make patients feel empowered, and everyone else in the healthcare industry uncomfortable. I believe that patients deserve deep, dangerous and real access to data. I think when we start talking about how data might actually be dangerous for patients, its just a sign that we are “doing it right”. I call this concept Radical Access to Data (and yes, that recursively spells “RAD”).

A few years ago, Tom Delbanco and Jan Walker pitched us with a simple idea: Patients should routinely be able to see the notes that physicians write about them. Now it’s true that we all have the legal right to see these notes, but obtaining them is anything but routine. The process involves phone calls, faxes (sic), duplicating fees and all sorts of other demoralizing steps. The net result is that reviewing your doctor’s notes about you is a rare experience.

Tom and Jan said that the physicians with whom they had spoken about this idea were split. Some were interested, some were resigned: They recognized that transparency was an increasingly powerful wave and that the world seemed to be heading this way, and the others thought they were crazy―notes were for documentation and communication among doctors and were never intended for patients. The arguments were of a religious quality―they were about belief and values. The obvious solution was to test the idea and let data help sort it out. Today, with the publication of the study results in the Annals of Internal Medicine, that debate is now illuminated.

One hundred and five primary care doctors, more than 19,000 patients and 12-months of testing at three sites has brought us to some striking findings: Patients overwhelmingly support open notes; they report significant benefits from it; and doctors reported that the effects on their practice have been minor. I encourage you to read the full paper so you get the full context (and do pay attention to the limitations section). You’ll find a number of interesting results. Here are three that I think are especially worth reflecting upon:

1. 60-78% of patients (depending on the study location) reported that they took their medications better. This is self-reported data, so the numbers might be exaggerated, but this finding, along with other results related to taking better care of oneself and understanding one’s health conditions better, suggests there’s a significant potential for clinical benefit.

I recently viewed health care through the lenses of a technology entrepreneur by attending the Health Innovation Summit hosted by Rock Health in San Francisco. As a practicing primary care doctor, I was inspired to hear from Andy Grove, former CEO of Intel, listen to Thomas Goetz, executive editor of Wired magazine, and Dr. Tom Lee, founder of One Medical Group as well as ePocrates.

Not surprising, the most fascinating person, was the keynote speaker, Vinod Khosla, co-founder of Sun Microsystems as well as a partner in a couple venture capital firms.

“Health care is like witchcraft and just based on tradition.”

Entrepreneurs need to develop technology that would stop doctors from practicing like “voodoo doctors” and be more like scientists.

Health care must be more data driven and about wellness, not sick care.

Eighty percent of doctors could be replaced by machines.

Khosla assured the audience that being part of the health care system was a burden and disadvantage. To disrupt health care, entrepreneurs do not need to be part of the system or status quo. He cited the example of CEO Jack Dorsey of Square (a wireless payment system allowing anyone to accept credit cards rather than setup a more costly corporate account with Visa / MasterCard) who reflected in a Wired magazine article that the ability to disrupt the electronic payment system which had stymied others for years was because of the 250 employees at Square, only 5 ever worked in that industry.

The Nationwide Health Information Network Exchange (NwHIN Exchange, or just Exchange) has been operating as an ONC program since 2007. For the past three years, a rapidly growing community of public and private organizations (Exchange Participants) has been routinely sharing information in production. That community now represents thousands of providers and millions of patients. Healtheway is new a non-profit, public-private partnership that will operationally support the eHealth Exchange (formerly referred to as the NwHIN Exchange).

On August 1, 2012, the Exchange Coordinating Committee appointed three representatives to serve on the Healtheway Board of Directors, including: Michael Matthews (CEO, MedVirginia), Paul Matthews (CTO, OCHIN) and Jan Root (CEO, Utah Health Information Network). These individuals, along with Healtheway’s Interim Executive Director, Mariann Yeager, will serve as the initial board of directors for the non-profit. The remaining Healtheway board seats will be filled by up to nine elected Healtheway members. The company launched its Member Program in August 2012, with elections for the member board seats expected in the Fall 2012.

Six months to the day after the Centers for Medicare and Medicaid Services (CMS) released the “preliminary rules” for Meaningful Use, the final rules are in. For clinicians and policymakers who want to see Electronic Health Records (EHRs) play a key role in driving improvements in the healthcare system, there’s a lot to like here.

For the Office of the National Coordinator (ONC), the agency that oversees the federal health information technology incentive program, the Meaningful Use rules are a balancing act. On one hand, ONC wants to get as many clinicians and hospitals on board with simply adopting EHRs (and thus, the need to set a low bar). On the other hand, they want to ensure that once people start using EHRs, they are using them in a “meaningful” way to drive improvements in care (and thus, the need to set a high bar). I think ONC got that balance just about right.

Let me begin with a little background. In 2009, Congress passed the Health Information Technology for Economic and Clinical Health (HITECH) Act, setting aside about $30 billion for incentives for ambulatory care providers and acute-care hospitals to adopt and “meaningfully use” EHRs. Congress specified that the executive branch would define Meaningful Use (MU) and would do so in three stages. The first stage was finalized in 2010 and its goals were simple – start getting doctors and hospitals on board with the use of EHRs. By most metrics, stage 1 was quite successful. The proportion of doctors and hospitals using EHRs jumped in 2011, and all signs suggested continued progress in 2012. Through July 2012, approximately 117,000 eligible professionals and 3,600 hospitals have received some sort of incentive payment.

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